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About Raleigh333

YES....I had a follow up from my endoscopy today-I do have celiacs. And I asked my doctor if celiac patients present acne as a symptom because I CAN'T BELIEVE how amazing my skin is getting. He didn't act like he sees it a lot-he redirected to more of the other common symptoms that he sees. I never had problems with acne during puberty/high school/beginning of college (i'm almost 25), but the past few years I have not been able to control large, painfu,l and long lasting zits. I've been gluten free for about 5 weeks and there is some redness from healing acne scars but my skin is level and smooth and i've gotten maybe 3 in the last month. I can leave the house with minimal makeup again!

About two years from the normal biopsy to the abnormal biopsy...I should have gotten a second opinion sooner so my advice to you is don't let this go! Normal biopsy in the spring of 2008. Doctor said no celiacs-and that's just I had a normal biopsy...but everything i've read said there just isn't damage yet. Feb 5 2010-abnormal biopsy...you can see the damage...i thought it would be solely microscopic. I've been a celiac, but nothing further was done for treatment the first time because the biopsy was normal. My new doctor said if you have positive tissue transglutaminase then you have celiacs...so good luck and let me know how this goes!

Hello! I can definitely relate to where you are coming from. 2-3 years ago I had positive blood work (not sure which test) but a normal biopsy when I had the endoscopy done. Wasn't happy with the gray area the doctor left me in. Read that you can have celiacs and just not have the damage to your intestines YET. Got a second opinion last month-positive blood work came back again (tissue transglutaminase, reticulin, and gliadin antibodies). Had an endoscopy 2/5/10 and woke up to pictures of my abnormal duodenum...and i'm 24. I was really shocked to see the damage...kind of scary. I thought it would be solely microscopic changes. He biopsied the abnormal sections of my duodenum, and said if the last doctor took a biopsy of a normal looking section, then yes, those sections would come back normal.
Celiac's is a spotty disease and sometimes damage occurs past the site that doctors go to when they do the endoscopy. I believe I had a normal IGA-cause i called to get the bloodwork in January and said I did not have Celiacs-but that was the only test result that had come in. BUT then the panel came back (with the elevated antibodies I listed above) and they called me back and said actually I DO have it. I was to change my diet immediately and ate gluten free for two weeks before my endoscopy. My new doctor is wonderful, and if I understand correctly said that if the tTG (tissue transglutaminase) is positive then you have celiacs. So see if you had that test done. I go back next week thursday to follow up and i'd like to know the exact levels so I'll share if they are helpful.

Welcome. I'm new to this forum but i've been aware of Celiac Disease for a few years. 3 yrs ago I had pos blood work and a normal biopsy. He said maybe a mild wheat allergy or IBS or mild mild Crohn's (I originally went to this doctor to follow up from an appendectomy-in which they also found out I had Hashimoto's, an autoimmune disease). I finally got a second opinion since symptoms have been worsening, and Jan 13 2010 I had positive bloodwork and was told to go gluten free immediately. I questioned changing my diet immediately because I wanted the abnormal biopsy this time around so I knew 100% that Celiac's Disease was the cause. They said that the few weeks on the diet won't change the biopsy, but I think it would mess up blood work. My doctor knew right away looking through the endoscope that there were abnormalities, and hearing that makes you never want to make a mistake in your diet! I was also ordered to get a CT scan which was normal and bloodwork that showed a slight Vitamin D deficiency.
I've only gone to 1 restaurant in the last month and that was Chili's last night. I checked their website before I went to make sure they would be prepared for me. They have an allergy menu that you ask for and they brought me my utensils wrapped up and seemed to be aware and familiar of procedures. All my other meals in the last 4 weeks I have cooked at home so I know every ingredient (this is tough for me-i was definitely eating too much fast food). I cook lots on the weekends cause there is not enough time for me during the week. Good luck with the transition!

Do you use the Eden Organics 100% Buckwheat Pasta? I haven't found any other brand that is 100% and the package just went from $7 to $8 at whole foods. They're so much better tasting than they look but literally quadruple the price.

Hello. I was also officially diagnosed via endoscopy Feb 5 2010. Started gluten free Jan 13 2010 after the doc's office calling about the positive serology. It's rough but I was mentally prepared since I thought this was a possibility for the past few years. Wish I would've been more persistent in following up. Also not sleeping well at all this week...slight migraines by the end of the school day, dizzy, and some heartburn which has steadily increased over the past year. Irritability i'm blaming on the stress this is bringing on with explaining this to coworkers and shopping and cooking for myself. I don't think symptoms are going to completely go away until the intestines can heal and the antibodies get out of our system...but I don't know for sure. Bloating/loose stools etc have cleared up...now i see what normal is again...couldn't tell with gradual changes over the years. These forums are comforting! Good luck

Hello,
Well welcome and congrats on your diagnosis. I was just officially diagnosed mid Jan. of this year after positive blood work results that and observable changes from my endoscopy last Friday. I feel like saying congrats just because of how many people don't know they have it. I was told I did not have it about 3 years ago after having positive blood work and a normal biopsy, so over the past few years i've been causing the damage and after getting a second opinion i'm finally told that yes, i do have Celiac's. It's difficult, and I ventured out to a restaurant today for the first time. I'm taking vitamins now and eating throughout the day and trying to eat more balanced meals. I try to plan my whole week of meals on the weekend and always try one or two more recipes at that time as well. I'm starting my own binder with the recipes that I do like from all of the recipe books.
Many recipe books have tables that show you how much of an alternate ingredient should be used in place of gluten ingredients. What type of ingredients are you looking for in the casserole? I have about 4 books I can look through to see the ingredients that are used. Xanthan or Guar gum are used a lot in what I see for use as thickeners in soups and sauces.
I'm a second year teacher and tutor after school twice a week. Mondays I bring all my food to school so it's not a bag every day that includes;-yogurt (not sure if i'm lactose intolerant yet-doesn't seem like it), certified gluten-free granola mix from whole foods, fresh salads for the beginning of the week and some frozen meals for the end of the week. Over the few weekends i've had i've made chicken cordon bleu, chili, veggie lasagna with rice lasagna...and i would freeze portions of that in containers and take them to school or have them for dinners as well. I've also enjoyed the 'Glutino' crackers, putting swiss or feta cheese with a tomato slice on top and broiling in the oven.
I hate the feeling of not knowing what to eat, and just in a month i've gotten much better at only taking 1 or 2 trips to the grocery store a week, and using the ingredients I buy in multiple recipes before they spoil...so I hope you develop your system and notice things getting easier as well. I made the 'monkey mix' that uses Chex cereal (may be good for the 5 year old-you can google "monkey mix' to see the recipe) and keep that in a sealed container if I need a quick snack. I'm not eating perfectly healthy, but I am eating more fruits and vegetables...and if having the snack to indulge in prevents me from tempting to cheat I feel like it's well worth it. Good luck! I'd love to share ideas.

Hello everyone,
Just here for some support and advice and to share my situation. Officially diagnosed after my endoscopy last Friday (feb 5 2010). I've read so many stories that are just like mine and it just aggravates me how many professionals aren't aware of this. Here's my story in as few words as possible:
October 2006 I had my appendix removed. While in the hospital they noticed a high TSH and diagnosed me with Hashimoto's and I was put on synthroid. Followed up with a GI doctor about 6 months later (waited longer than I should have) and he did celiac blood work without me knowing. That came back positive so I had endoscopy #1--end of 2007. That came back normal so the doctor said I didn't have celiac's disease but that if I felt good on the food then just give it a try. He also said if anything that i'd have IBS or mild mild Crohn's. Turns out the damage just had not yet been done to my intestines. Moved away for a job, and the thought of having Celiac Disease has been in the back of my mind ever since. Learned a lot about it and felt like the symptoms describe me very well. Decided to get a second opinion and again had positive bloodwork Jan 13 2010 and now finally the duodenum showed abnormalities Feb 5 2010.
I'm glad to have the diagnosis 100%, even though it's difficult. I want to kick myself for not getting a second opinion sooner, but I'm also thankful because I am almost 25 and should be healed enough to not have to deal with infertility problems related to this when it's time to have children. It's difficult to explain to people because they think it's a diet they should try. It just gets lonely, I have no family where I am, and I'm getting paranoid about crumbs and my students' snacks!
CHEATING:
Never plan on doing it, hope it never happens. I think about how much I can prevent long term by following the diet perfectly. Family has asked what a little bit does to you, and I don't know how to answer it. Now that I have the pictures of my damaged duodenum I want that damage to go away and never come back, as well as all the symptoms (steatorrhea, joint pain, migraines). I'm not gonna lie it's ran through my head to think maybe on new years i'll cheat, or maybe on my birthday i'll cheat....but I really can't justify that in my head, and I'm sure I would just feel guilty after. I think about how i've been working my butt of cooking and grocery shopping...and to do all that work perfecting your meals and then ruin it. Also the guilt later on finding out about more severe problems (cancer) from not following the diet. I've already wasted years consuming gluten so I'm taking vitamins and eating very healthy in hopes to go in reverse! My friend's boyfriend has celiacs and she's mentioned that he isn't careful with sauces and all those hidden sources and will end up in the bathroom for way too long. His levels aren't as low (obviously) as his doctor's would like so that shows that a little amount here and there is still causing a response.